Others who suffer from any of the following Neurologic conditions Spasmodic Torticollis, Dystonia and/or Spasticity

[davedystoniast]

I have suffered from Spasmodic Torticollis (now more commonly known as Dystonia) for some 30 add years with a myriad of pharmaceutical treatments----at least 30 individual/unique medications non-duplicating----and with Botox injections designed to slow the movements down.  The condition is rare but many Parkinson's Patients have been rediagnosed with Spasmodic Torticollis as the movements are similiar.  I have seen there have been clinical trials using Lacosamide, my Neurologists regected a suggestion by me to give this medication a trial.  He declined as he is concerned that the drug would make me "euphoric".  After 30 years of Hell and now pushing age 50, unmarried, spasctic, unable to work and severly depressed, it is a side effect I am willing to restore after all the misery, social embarassement and increasing lack of cognitive function.  Can anyone here relate?
Thank you,
Dave

[warden63]

Hi Dave, I can somewhat relate to what you have and are going through. I have cervical dystonia..for how long is unknown, since many things have been happening to me for years. I also have had many medications, dr;s, specialists who all had said it was all in my head. I lost the use of my fingers on the right a few months back, and now my neck is locked to the right. I also am unable to work now, and absolutely understand the embarrament. The spasms, cramp, body tremors, head tremors, i go through every day makes the easiest things hard to do. I am looking into botox injections, my dr's say it will release my neck. my only problem with that is it causes dyphasia, which I already have, and possibly difficukty with breathing, since it weakens that main part of the neck muscles. But it may be something for you to look into. Good luck to you, and do try to keep your chin up, I know it's hard, but we have to keep fighting. Take care, and I hope this was helpful. Regards, Warden63